posted
Apparently my startle reflex has shifted into high gear.
Any unexpected sound makes me jump, heart pounding, eyes wide.
If I had longer nails, I'd probably be hanging from the ceiling like a cartoon cat.
Not only that but I'm now getting something like electrical shocks throughout my body in relation to sound.
This isn't hard on my ears - it's the rest of me that's having the issue.
Do you think this is part of lyme or do you think it's more adrenal related?
Does it pass?
Anyone else get this?
Thanks!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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posted
Yes, I had this. Ringing phones, slamming doors, creaking house, barking dogs, sudden computer noises. You name it, it made me LEAP.
I have no idea what in particular was the culprit, but it began going away on Rifampin/Doxy/zith. For many months I had to sleep with earplugs because every little noise startled me violently awake. Like the regular insomnia was not enough
It is much better, almost gone now. Good luck
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Curiouser: Apparently my startle reflex has shifted into high gear.
Do you think this is part of lyme or do you think it's more adrenal related?
Does it pass?
Anyone else get this?
Thanks!
Do you think this is part of lyme or do you think it's more adrenal related? yes
Does it pass? yes
Anyone else get this? i use too
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Could be adrenal related. Doc will do adrenal testing if he thinks you need it, so be sure you mention it on Tues.
Sorry I can't help from experience, I never had that symptom.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Curiouser: Apparently my startle reflex has shifted into high gear.
Any unexpected sound makes me jump, heart pounding, eyes wide.
If I had longer nails, I'd probably be hanging from the ceiling like a cartoon cat.
Not only that but I'm now getting something like electrical shocks throughout my body in relation to sound.
This isn't hard on my ears - it's the rest of me that's having the issue.
Do you think this is part of lyme or do you think it's more adrenal related?
Does it pass?
Anyone else get this?
Thanks!
Do you think this is part of lyme or do you think it's more adrenal related? Yes
Does it pass? Yes
Anyone else get this? Had it before took awqhile but it passed after enough abxs
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
It did pass after a few months of treatment with doxy.
For me, it was compounded by changes in my peripheral vision - I kept 'seeing' things at the far edges of my field of vision (which weren't there!) which would also startle me. Combined with the 'sound' startles, it was a very disconcerting symptom.
I still sometimes have hyper-sensitivity to sound, but not in the 'startled' way anymore - hope yours goes away too - it can't be good for our bodies to go into hyper-mode so often.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I too can relate to this since I was surely jumping through the roof and I would always hear, "RELAX", but it was just so far out of my control and know family just had no clue.
It did get better with treatment, came back and now settling back down, so I do know that treatment can help this one. As others have said, getting the adrenals checked is helpful too.
But try to hang in there. My family would tell you I was insane with the way I would startle and it DOES get better.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Hi. Yeah I still get this every so often but mainly it was before going on IV. Diagnosed as Hyperacusis. Still have it with some violin pitches and vocal pitches. Basically I amplify sound for those pitches. The weird thing is I have trouble hearing what people are saying in a noisy room more than before.
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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Since the dx on the piece of paper was "borderline", my docs didn't think it was bad enough to treat, in spite of the actual levels.
I'm hoping the LLMD will be more aggressive about this than my holistic MDs have been.
Thanks!
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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posted
Curi, my LLMD just started treating my adrenals and thyroid, both of which were in normal range, but the low end of range, as I started getting control of the Lyme.
He may/may not treat it from the beginning ... there are so many other concerns in the beginning of treatment.
I'd definitely bring up the startle reflex though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
For me it was a chronic build up of Neurotoxins and bart, the more I was treating lyme the worse it got, I was jumping out of my skin - I was put on the Actos/Cholestrymine protocol with other detox vits and within 3 weeks it has decreased by 40-50%, although the initial herx was HORRIFIC when starting chloresrymine (even at a tiny dosage). I am also told that my over active reflex was due to Bartonella also - so the combination of Bart and neurotoxins were enough to send my CNS Nuts, my New LLMD did my knee reflex and I nearly kicked him in the face.
So a combination of Bart and neurotoxins are what caused mine, I start bart treatment withing the next 2 weeks and continue of getting rid of the neurotoxins before starting back on Lyme AB's.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I've had the same thing from sounds (not necessary loud), flashes and even sharp motion such as a bird flying by me.
I hear it is common with lyme. Technically, it may be called myoclonus.
From what I've studied it is both from the lyme itself and from the liver overload. But no harsh stuff for liver. Gentle support like milk thistle might help.
Magnesium helps. Frequent rests are vital. Calm your system as much as you can. Caffiene can make it worse, so can skipping a meal or having low blood sugar.
Be careful not to overtax the liver as this could be a toxic build-up and the liver has to get you through it.
And, yes, the adrenals are likely involved, too.
Clearing the infection, I hear, really helps stop this. I've never gotten "real" treatment, but I sure hope you can. I even have seizures from startles. . .
ARE YOU GETTING GOOD TX ?
I don't want to "startle" you, but if you change your treatment, this may not get worse.
If you do an adrenal test, do not let them shoot steroids into you for the "challenge" test. Do not. Do not. Do not.
Adrenal support may help, just as magnesium does clearly but, ultimately, it's clearing the infection.
You may wonder why I have dealt with this for over ten years: the only natural substance I can get that does help is one particular brand of allicin. But I cannot tolerate the allicin due to tinnitis (for me, others don't seem to get it). No other herbal helps with the underlying cause like allicin .
I can get doxy, but I break out horribly. Mino raises tinnitus to much for me. So, I've never found my plan yet and we have no doctors here. But you can. I hope you have an LLMD.
When I could take doxy, that was like a miracle with this. Amazing, actually, on several occasions. But I could not continue it due to the rashes (for me, again, I must be allergic to it now).
You, I hope, can make some shifts to your protocol or change it so that this is addressed promptly.
My concern is that the "Kindling" of the brain with each startle will set up an pattern that can lead to intensification of this.
Some people find klonipin helps (it turned me to jello) or neurontin (jello, again).
But these may help you. I'd sure start with tiny doses, though. And respect the CAUSE of this. Right now, don't put yourself in taxing environments. You have to do everything to avoid "kindling".
B-vitamins,
Fish oil
adrenal herbs such as ashwagandha, Siberian ginseng, cordyceps help.
Avoid anything that is meant to "boosts your energy" as it can be too stimulating.
NMDA receptors are probably too high, GABA too low, but be careful about just taking GABA. Precursors better.
Taurine and Glycine are also important for this. In fact, taurine may be the best supplement for this. At night.
and . . . what Rianna says above.
This also could involve something called long (or is it short) QT syndrome. So that is why NOT putting yourself in stimulating situations now is important in case this is a part of it.
it's very detailed, and more likely the lyme and toxins, but it should be considered by your doctor.
------
I just got up . . . will come back to this and clean it up - sorry it's not organized, but wanted to share in hope of helping. I'll come back and post a few abstracts to back up what I've mentioned.
So sorry you are going through this.
-
[ 27. February 2008, 01:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I'm not ready to go back over my previous post, but just thought of this:
For sleep, and to calm the neuro stuff, this might help.
Night time only. Take before 10 pm or even earlier. Do not drive until a good night's sleep. Do not take during the daytime.
One half tablet may be sufficient for some people. Do not exceed suggested use.
See link for other instructions.
Taurine and GABA can be very sedating for some. Melatonin is just for night-time use.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
And the neck might be involved.
If you can get gentle (not snap 'n crack) osteopathic or chiropratic, that might help.
Cranial-sacral treatments.
In my experience, it is not enough for me, but it depends upon your neck.
I hear one approach that is gentle chiropractic is called DNFT, direct non-force something. You can google DNFT for more info. I've not done this, but have heard from a friend that it helps her.
posted
Rianna and Keebler, You might have something there with the toxins/liver thing.
I've been on an anti-candida diet for a week now as well as taking caprylic acid and probiotics.
If toxins are indeed part of the cause of this, I wonder if that might be where they're coming from.
In addition, I've also been having acute gallbladder problems this past week. Scheduled for a hida scan next week.
Wonder if that could be messing with my liver as well?
I've been doing coffee enemas to try to clear out some of the toxins.
I'm having a little trouble balancing no carb with low fat on this diet. But anyway.... ----------------
Keebler, I'm not in treatment yet. See the LLMD for the first time on Tuesday.
During the last 2 months, my neuro symptoms have increased exponentially.
I've been working on eliminating toxins from my diet. Still "treat" myself to a cup of coffee in the mornings tho.
I know its not good for me. Unfortunately, its all I have left. Will be switching over to the dreaded decaf.
I take 400mg of magnesium (as magnesium citrate) daily. I also supplement with all the Bs, vit C, vit D, iron, calcium, selenium, omegas,
and take 100mg of iodine (lugol's solution) daily in order to try to fight the possible cancer in my thyroid.
Overall, stress isn't easy to eliminate. I've cut down as much as possible, but money is a huge problem for us.
I can't work anymore so we only have one income. Can't walk away from that kind of stress.
Thank you so much for all the information. I keep coming back to your replies and slowly a little more sinks in each time.
I'm sorry proper treatment has eluded you. It can't be easy to try to heal and the very body you're working on can't tolerate the cure.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Thanks for your comments. I do hope this sensitivity eases for you. It can be very hard on the body and the sooner it can ease, the better.
You can increase magnesium to the point of bowel tolerance. You may need more. Other minerals, too, would need to be raised to keep in balance. Magnesium is a great detoxifier, BTW.
Inflammation is another consideration with lyme or it can also come around to how well we get the toxins out.
Iodine makes me much more jumpy. Not sure why that happens, but that might something to monitor around the time you take it and ask your doctor if this might be doing that for you how to offset that as you need it for the thyroid.
I have a dropper bottle so it's easier than a tablet form.
Caprylic acid, too, really set my receptors on "red alert." Not to say, don't take it, but just notice if anything you take intensifies this startle reaction.
While you seem okay with making peace with the sensitivity - and I admire that - it is telling you something. Please be sure to tell your doctor.
-
I wonder, did you say "no carb ?"
Some complex carbs may be very helpful for this, especially to prevent excess porphyrins that can be toxic. (see link below) Our brains need carbs. Our bodies do to, for energy and to do all they need to do.
I know so many here, and I, too, have tried to have no grains at all, but that may not work for everyone. Maybe just a half-cup of quinoa ("keen-wa" - a high protein grain) . . . with greens, etc. and your protein.
Wild rice (a grass) . . . buckwheat (a legume) . . . all have good nutrients. Complex carbs help with a steady control of blood sugar. Lentils . . . if you season with garlic and onions, that should not feed yeast but will fuel you nicely.
those kind of carbs can work for you.
If you can get it, RED quinoa by Ancient Harvest is great. Nutty, and you don't have to rinse it first in a fine mesh strainer like the regular quinoa. But regular quinoa is wonderful nutrition and very light as grains go.
I seem to be posting this a lot lately, but it seems to be so relevant. You might look at this article for information on porphryia. While it can be genetic or acquired, this guy with a protocol for Cpn that has a similar tx protocol to lyme has some good stuff to say.
As for some of the foods, the non-gluten grains are my best bet. If it comes down to maybe feeding yeast or preventing the excess porphyrins - carbohydrates can save a life.
Sometimes, a herx may be porphyrin build-up due to inability to detox through the Cytochrome P-450 liver pathway.
Also, if we try to starve the yeast or the bacteria, our bodies will also starve and lack in nutrition. That's what I've gathered, anyway. Some people can do it, it seems. But others, like me, tend to pass out without grains and vegetables.
Your body might be ready to add some new foods, but you can ask your doctor next week.
If your brain is doing a myoclonic pre-seizure dance with this stuff you need more good fats in your diet.
I know you are taking your omega supplements, a supplement is not nearly for our brains need to function.
Salmon, sardines, olive oils Eggs are excellent - best if organically fed and free range and raised close to you.
Canned tuna would be good except that, often, it is high in mercury contamination and most canned tunas have some forms of MSG, which all by itself is neurotoxic (as is aspartame/nutrasweet - just for anyone new reading this).
Good any time of the day are Walnuts, macadamia, others . . . Brazil nuts have great fat and good selenium. We should all have two each morning. (Note, for those with herpes/cold sores, nuts may need to be limited.)
There is some research to back this up. Sorry if this is a jumble. I'm not so great at organizing this.
I really hope this works out for you. It's not easy to have so many different opinions or possibilities tossed your way.
As for the morning coffee, If you can have that during or after your meal it might not be as stimulating ? At least it would not affect blood sugar as much and that might help with lessening the startle reactions.
Good luck.
-
[ 27. February 2008, 09:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I've been on the iodine since July. Haven't had a problem with it before.
But then our bodies seem to change from day-to-day if not hour-to-hour, don't they?
I'll start taking note about the caprylic acid and jumpiness. Maybe skip a day and see if there's any improvement.
I'm doing the low fat for only one reason - gallbladder problems. Even too many "good" fats bother me.
I've been sticking with lean chicken and fish, eggs 2 mornings a week, a few nuts (soaked almonds), and minimal oil necessary for cooking.
Any more than that and I'm in pain for days. I've had to follow this for the past few months.
The "no carb" thing... well, yeah. I've cut out grains, fruits, and starchy veggies (potatoes, carrots, can't eat corn anyway).
Been eating mostly leafy greens, onions, garlic, peppers, broccoli, cabbage, and other veggies.
To be honest, I've felt just awful since starting this a week ago. Thought it was the yeastie bugs dying off.
Never done this kind of thing before, so its hard to tell.
The local supermarket carries the red quinoa. I have some plain here, but haven't made it yet. Also have a bag of roasted buckwheat.
It's going to take me awhile to wrap my head around the info on the porphyria page.
My comprehension brain cell went walkabout a couple of months ago and hasn't come back yet.
Thank you so much for the time and effort you've taken to help me. I sincerely appreciate it.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Ohhh, sorry. I missed the gallbladder thing. yeah, I see why low fat, then. I wonder if a bit of lemon juice might help digest your dietary fats ?
If you make regular quinoa, be sure to rinse it before cooking in a fine meshed strainer. It will just go right through a regular one.
The red q. I have says no rinsing necessary. you can check your box. Mine in Ancient Harvest. 1 cup water to 1/3 c. quinoa and in no time, it's perfect. Adding a drop of oil to water keeps it from boiling over - but it still needs watching.
as for reading the porphyria link, it's hard to read as they cram it all together. And, I've had to deal with this for 10 years and still trying to understand it. I ignored it mostly when lyme was dx, but then this article made me realize I should reconsider.
I know we've all tried to stick to very harsh plans along the way. Listen to your body (unless it's screaming for Ben & Jerry).
The buckwheat . . . cook like rice but it just takes about 30 minutes. Breakfast: a little stevia and cinnamon and soy or rice milk . . . other meals add thyme, onions, whatever.
It's good in soups in place of barley (which has gluten).
Here's a thought. If the magnesium is increased and bowels move better, the gallbladder may just be happier. Just my wondering about that. I've not read that anywhere, but I have read that glycine is very good for the gallbladder. It is in beets and in some supplement formulas.
I know beets are high in sugar, but I feel GREAT when I eat beets mixed with other foods to balance out the sugar.
take care. It is sort of like landing on another planet, eh ?
Coffee intake is associated with lower risk of symptomatic gallstone disease in women.
Department of Nutrition, Harvard School of Public Health, Boston, Massachusetts, USA.
BACKGROUND & AIMS: Metabolic studies have shown that coffee affects several hepatobiliary processes that are involved in cholesterol lithogenesis. We previously showed that coffee drinking was associated with a lower risk of symptomatic gallstone disease in men.
Excerpt:
CONCLUSIONS: These data suggest that consumption of caffeinated coffee may play a role in the prevention of symptomatic gallstone disease in women.
Association of coffee consumption with gallbladder disease. Ruhl CE, Everhart JE.
Social and Scientific Systems Inc, Bethesda, MD 20814-4805, USA.
Coffee consumption was recently shown to protect against symptomatic gallbladder disease in men.
The authors examined the relation of ultrasound-documented gallbladder disease with coffee drinking in 13,938 adult participants in the Third National Health and Nutrition Examination Survey, 1988-1994.
The prevalence of total gallbladder disease was unrelated to coffee consumption in either men or women.
However, among women a decreased prevalence of previously diagnosed gallbladder disease was found with increasing coffee drinking (p = 0.027).
These findings do not support a protective effect of coffee consumption on total gallbladder disease, although coffee may decrease the risk of symptomatic gallstones in women.
Gallstone formation (cholelithiasis) is another disease with a very low incidence in primitive societies, yet in modern society it affects more than 20% of women and 8% of men over the age of 40 (Gracie 1982).
Each year hundreds of thousands of gallbladders are surgically removed, at great cost. 75% of all gallstones consist primarily of cholesterol, while the rest are formed from pigments (calcium bilirubinate), bile salts, bile pigments, inorganic calcium salts, and other minerals.
It is important to know the composition of the stone because pure cholesterol stones are far easier to dissolve with prescription medicines (Roda et al, 1982).
Therefore, it is necessary to see your doctor for the appropriate tests to determine the size and type of stone before trying herbal therapy.
Herbal and chemical medicines do not always work, or may only work temporarily, so as with most diseases, prevention is the best strategy. In traditional terms, gallstones are a result of heat and dampness leading to blockage.
The symptoms of gall bladder are often silent. The most common warning signs of symptomatic gallbladder disease are dyspepsia, nausea, belching and vomiting. Patients may also experience episodic pain in the upper right quadrant of the abdomen, jaundice or infection. Some cases also present with cystic or common bile duct obstruction. Cases of blockage or severe pain require emergency medical attention.
Guidelines for Prevention and Treatment of Gallstones
* Obesity causes more cholesterol to be secreted in the bile, so preventive measures include exercise and weight control. Obese individuals are far more likely to develop gallstones than individuals at a healthy weight.
* Dietary fiber inhibits cholesterol stone formation by reducing the biliary cholesterol saturation (Schwesinger et. al 1999).
* My recommended diet for heat and damp, as well as moderate use of healthy fats and oils can help improve liver and bile function, clear blood fats, and aid in keeping the intestinal flora healthy (Scobey et al 1991).
* Diets that promote quick weight loss with drastic caloric restrictions can promote gallstone formation.
* Exercise can prevent gallstone formation (Utter and Goss 1997). The Harvard School of Public Health reported in 1999 that women who exercise regularly (2-3 hours per week) cut their risk of gallstones by as much as one third.
* Drinking several cups of dandelion tea each day can prevent gallbladder attacks (reported in Weiss, 1988).
* Volatile oils, such as the limolene found in lemons, can help dissolve gallstones. The European prescription herbal medicine Rowachol, made primarily from mint oils, has also demonstrated effectiveness (Ellis and Bell 1981).
* At our clinic we use a product called Mentharil, made by Phyto-pharmica, to treat gallstones. This sort of therapy takes many months to work and exhibits better results when combined with pharmaceutical bile acid therapy.
* Milk thistle seed and turmeric root both increase the solubility of bile, which helps prevent stone formation, and can aid in elimination of small stones. I recommend about two grams of turmeric and 600 mg of milk thistle extract per day.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Yes Curiouser, I had what you explain VERY badly!!!It's agonizing!! It seems to be a lot better now.
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